Discussion
Leukaemia
Had anyone here had to deal with leukaemia. I’m waiting for my wife’s diagnosis to come in over night and obviously the weight of the world is now on my shoulders.
A few weeks ago she started getting night sweats, headaches at all times of day , weird bruises popping up on her legs and last Friday found a lump in her groin. Phoned the doctors on Friday last week and they took bloods and we were awaiting the results on Tuesday.
We get a phone call today from the oncology department asking for my wife to attend ASAP. 3 hours laters she’s had bloods, skin samples and a bone marrow biopsy. They checked fairly quickly and reported back very concerned with white blood cells. Original blood test was “3” today’s blood test was “70”.
We are now waiting in the oncologist ward waiting for a bed with everyone looking very concerned.
Obviously I’ve read the internet and panic has set it in. I’m looking at the acute types that mention white cell growth and all deeply concerned. What’s the usual treatment , life expectancy and full recovery?
Can someone please give me some hope. We are waiting for the full results in the morning but I simply don’t know how to cope. I’ve got kids at home waiting up for news and I’m scared on how we will deal with this. I’m sat in the car outside waiting to go back in once she’s been assigned a bed and im in a mess
Had anyone here had to deal with leukaemia. I’m waiting for my wife’s diagnosis to come in over night and obviously the weight of the world is now on my shoulders.
A few weeks ago she started getting night sweats, headaches at all times of day , weird bruises popping up on her legs and last Friday found a lump in her groin. Phoned the doctors on Friday last week and they took bloods and we were awaiting the results on Tuesday.
We get a phone call today from the oncology department asking for my wife to attend ASAP. 3 hours laters she’s had bloods, skin samples and a bone marrow biopsy. They checked fairly quickly and reported back very concerned with white blood cells. Original blood test was “3” today’s blood test was “70”.
We are now waiting in the oncologist ward waiting for a bed with everyone looking very concerned.
Obviously I’ve read the internet and panic has set it in. I’m looking at the acute types that mention white cell growth and all deeply concerned. What’s the usual treatment , life expectancy and full recovery?
Can someone please give me some hope. We are waiting for the full results in the morning but I simply don’t know how to cope. I’ve got kids at home waiting up for news and I’m scared on how we will deal with this. I’m sat in the car outside waiting to go back in once she’s been assigned a bed and im in a mess
Sorry cant help with sensible info but sending positive energy to you
Have a mate who was diagnosed with leukemia 20y ago and is still an annoying PITA
but am aware of several different sub typesGo home and try and sleep and see what the specialists say to you all tomorrow
Best wishes, and good luck
A lot of it depends on type, like you say chronic vs acute (and the occasional chronic that changed into a nasty acute).
From reading historically (family member with chronic), I’d wait until you have diagnosis and then read up - ‘leukaemia’ is a broad term, as no doubt you know now!
All the best
From reading historically (family member with chronic), I’d wait until you have diagnosis and then read up - ‘leukaemia’ is a broad term, as no doubt you know now!
All the best
Again not much I can offer medically but my old man had a rare form called Hairy cell leukaemia. Misdiagnosed for about 3 years due to the rarity, it was only discovered after an operation for which he had to have platelet transfusions
He eventually had one round of chemo after diagnosis and has been in remission for just over 15 years. Bizarrely it was actually a better diagnosis than the original as that was untreatable anaemia
Thoughts with you and your family and hoping for good news
He eventually had one round of chemo after diagnosis and has been in remission for just over 15 years. Bizarrely it was actually a better diagnosis than the original as that was untreatable anaemia
Thoughts with you and your family and hoping for good news
Hello, thanks for all of your messages last night.
She has AML leukaemia. Appears to be caught early enough to start Chemo tablets this afternoon, reduce white blood cells, more bloods and then stronger chemo next month if needed. Stuck in hospital of course but the Consultant seemed fairly up beat regarding the treatment planned.
Been offered some trial courses of new medicines which we will digest over the next few days.
NHS are bloody brilliant aren’t they? Within a few hours of arriving we had their full attention , results , a private room and a road map of treatment....
She has AML leukaemia. Appears to be caught early enough to start Chemo tablets this afternoon, reduce white blood cells, more bloods and then stronger chemo next month if needed. Stuck in hospital of course but the Consultant seemed fairly up beat regarding the treatment planned.
Been offered some trial courses of new medicines which we will digest over the next few days.
NHS are bloody brilliant aren’t they? Within a few hours of arriving we had their full attention , results , a private room and a road map of treatment....
My wife had AML in 1997 and needed a bone marrow transplant. Since then has been great and run a marathon for Anthony Nolan https://www.anthonynolan.org/ who were fantastic in finding her donor in America.
Good luck with it all.
Good luck with it all.
My brother's wife has this. She was offered some new trail drug where your cells are taken out, reconfigured, and placed back in. T Cells if I remember ? Saved her. This was 4/5 years ago and 2 kids later. This new treatment has since been rolled out to the NHS. Meant to be £120K treatment. Ask about it.
sbk1972 said:
My brother's wife has this. She was offered some new trail drug where your cells are taken out, reconfigured, and placed back in. T Cells if I remember ? Saved her. This was 4/5 years ago and 2 kids later. This new treatment has since been rolled out to the NHS. Meant to be £120K treatment. Ask about it.
CAR T-cell therapy. They genetically modify either your own, or a donor's, T-cells to hunt out & kill the leukaemia cells. Interesting bbc documentary about it a couple of years ago (War in the blood). The room gets very dusty when you watch it. Not sure whether or not it'd be a good for the OP to watch, though.
OP I've no medical input to offer, but work in the pharma industry. Oncology is a rapidly developing field, there's a lot of development in the haematology cancers, both new drugs and new combinations.
Wishing you, your wife, and family all the very best.
There's also the 'effing cancer' thread on here as well for support (& to vent)
My wife was diagnosed with multiple myeloma 18 months ago. No symptoms other than a persistent bad back and hot flushes (thought it was early menopause). Saved by a Dr who noticed she hadn’t had a blood test for 20 years and did it as ‘routine’ for someone in their 40s. Her blood levels were so high they didn’t know how she was functioning normally.
6 months of chemo (injected), 12 months suspended treatment due to COVID, then her levels were so dangerously high she was No1 in the region for a stem cell transplant.
They used her own cells, but a pretty brutal three weeks in hospital that left her quite ill.
Six months later and she’s almost back to normal , but with short hair after losing it all.
It’ll never be cured and she’s on medication for life, but no reason she can’t have a long and normal life
6 months of chemo (injected), 12 months suspended treatment due to COVID, then her levels were so dangerously high she was No1 in the region for a stem cell transplant.
They used her own cells, but a pretty brutal three weeks in hospital that left her quite ill.
Six months later and she’s almost back to normal , but with short hair after losing it all.
It’ll never be cured and she’s on medication for life, but no reason she can’t have a long and normal life
Pinkie15 said:
sbk1972 said:
My brother's wife has this. She was offered some new trail drug where your cells are taken out, reconfigured, and placed back in. T Cells if I remember ? Saved her. This was 4/5 years ago and 2 kids later. This new treatment has since been rolled out to the NHS. Meant to be £120K treatment. Ask about it.
CAR T-cell therapy. They genetically modify either your own, or a donor's, T-cells to hunt out & kill the leukaemia cells. Interesting bbc documentary about it a couple of years ago (War in the blood). The room gets very dusty when you watch it. Not sure whether or not it'd be a good for the OP to watch, though.
OP I've no medical input to offer, but work in the pharma industry. Oncology is a rapidly developing field, there's a lot of development in the haematology cancers, both new drugs and new combinations.
Wishing you, your wife, and family all the very best.
There's also the 'effing cancer' thread on here as well for support (& to vent)
Thanks everyone for the words of comfort. I will venture over the cancer thread. Thanks for the hint on that one.
She started hydroxycarbamide tablets yesterday to try to lower the white cells. More blood taken over night and already this morning they’ve reported that their production seems to have slowed down. So I’ll take any good news at the moment.
These tablets will continue until the end of the week which will be followed by another bone marrow biopsy and check. If cells are still reducing or at a flat level she can come home for a few days. Before coming back a week later for chemo.
I won’t say which hospital we are in but we are close to a university that is running clinical trials and she’s been offered something called AML19. Lots of paper work to read through.
Thanks for all the advice. Seems odd chatting to strangers but I don’t really have anyone else! Thanks
She started hydroxycarbamide tablets yesterday to try to lower the white cells. More blood taken over night and already this morning they’ve reported that their production seems to have slowed down. So I’ll take any good news at the moment.
These tablets will continue until the end of the week which will be followed by another bone marrow biopsy and check. If cells are still reducing or at a flat level she can come home for a few days. Before coming back a week later for chemo.
I won’t say which hospital we are in but we are close to a university that is running clinical trials and she’s been offered something called AML19. Lots of paper work to read through.
Thanks for all the advice. Seems odd chatting to strangers but I don’t really have anyone else! Thanks
Edited by oldaudi on Wednesday 21st July 15:22
oldaudi said:
Hello, thanks for all of your messages last night.
She has AML leukaemia. Appears to be caught early enough to start Chemo tablets this afternoon, reduce white blood cells, more bloods and then stronger chemo next month if needed. Stuck in hospital of course but the Consultant seemed fairly up beat regarding the treatment planned.
Been offered some trial courses of new medicines which we will digest over the next few days.
NHS are bloody brilliant aren’t they? Within a few hours of arriving we had their full attention , results , a private room and a road map of treatment....
Best of luck with it.She has AML leukaemia. Appears to be caught early enough to start Chemo tablets this afternoon, reduce white blood cells, more bloods and then stronger chemo next month if needed. Stuck in hospital of course but the Consultant seemed fairly up beat regarding the treatment planned.
Been offered some trial courses of new medicines which we will digest over the next few days.
NHS are bloody brilliant aren’t they? Within a few hours of arriving we had their full attention , results , a private room and a road map of treatment....
My mum was diagnosed with aml a couple of years ago. It is very important to find it in time, so that’s good that they have. It is treatable, and the trials seem to be the way to go. Sadly my mum didn’t make it, but this was because she also had another unrelated cancer. Hope the treatment goes well. Don’t think I have anything useful to add, but if you have any questions, ask, and I’ll see if I can remember anything.
The Mrs has been in hospital for 12 days now. Her drugs are working and they’ve managed to get the white blood cells down to a normal level. But this has impacted her red cells and platelets.
They were taking bloods 3 times a day to check, this is now down to one via a PICC in her arm and chest. Still waiting for the results of the bone marrow which will dictate the direction of the chemotherapy treatment which should start soon.
McMillan have allocated her a specialist who has been in contact regarding wigs and a blue disabled badge for parking!
Things look good at the moment but obviously it depends on the success of the chemotherapy but everyone that has seen her said she’s young, healthy, fit and didn’t need many drugs to get the white cells under control.... so I’m taking all of that as positive at the moment.
They were taking bloods 3 times a day to check, this is now down to one via a PICC in her arm and chest. Still waiting for the results of the bone marrow which will dictate the direction of the chemotherapy treatment which should start soon.
McMillan have allocated her a specialist who has been in contact regarding wigs and a blue disabled badge for parking!
Things look good at the moment but obviously it depends on the success of the chemotherapy but everyone that has seen her said she’s young, healthy, fit and didn’t need many drugs to get the white cells under control.... so I’m taking all of that as positive at the moment.
Edited by oldaudi on Saturday 31st July 18:55
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